This ball's seen me through a lot of hard times. See, I've been down. Low, low, low. Lower than ever before.
(My god, that kid is cute. Maybe one day I'll make one for Sadie. I definitely have a picture of her from every week.)
I had all the symptoms: depression, anxiety, fear, disassociative behavior, lack of interest in anything except Sadie...
I started to talk about it with my cancer camp friends (First Descents, y'all) who had experienced exactly what I was going through and some of whom are still feeling it today. (Soon I'll hit you up for more FD money, but this is why.) They helped me to understand that I didn't have the life I did 2 years ago. And that I don't have the life my friends have today.
And I am dreaming again. Of Kristie's wedding, in 5 days (!). Of a January spent in Los Angeles. Of my trip to Hawaii in December. Of my friends' annual ski trip. An FD reunion in 2014. And Erin's wedding in April (bridesmaid for the fifth time! 22 away from a movie deal, bitch!). And maybe a place in Brooklyn in the spring...
We are trying to find a way to break up.
At 7, I wake up and drive alongside the ocean for 12 wide miles, a route I’ve done more times than I can count. I used to do it on my way to high school, to pick up my best friend, even though it was completely out of the way. I used to watch the sunrise, peaking over the dunes, over the mansions, empty in the winter and bustling in the summer.
Along Ocean Avenue, women run in pink and men are not there, already in the city for work by the time I depart at 7am. Jogging strollers smack the smoothed pavement, replaced over the winter after Superstorm Sandy.
The debris is less now; the summer is approaching its’ end at breakneck speed. It has been an odd summer, a bit crippled. We cheer when our favorite bars and restaurants and beaches reopen; we reconcile the fact that some may never open again.
I head over the bridge into Atlantic Highlands, the ocean behind me and the river on my left and right, Twin Lights lighthouse straight ahead. I’ve tried to take pictures of this view, but it simply cannot be captured. The blue water around me, stretching for miles.
I stop to get coffee and then I am at my sister’s front door, my niece clapping because she’s excited to see me.
The morning is hot, hotter than it’s been, a welcome August tradition of sticky seats. I believe in the weather, the moods, the feelings. The way the sun shines when you need it most, and rain for the days you need to stop and rest
Last night I didn’t sleep because of the sores in my mouth and the anxiety bouncing in my stomach, turning the walls of my gut raw and aching.
The baby and I visit my friend, my writing mentor. She asks about writing. She tells me I will finish the book when I’m ready. I’m not ready.
I drive in circles for an hour to let Sadie sleep in the backseat. I drive past Bruce Springteen’s house and remember the time I almost ran over his wife. When I pull back into my sister’s driveway, the baby’s face is red and angry from the sun streaming through her window. Fuck, I think. Sunscreen.
I’m shaking from the pain as I lift Sadie into her crib. I pray she will sleep. I take a painkiller. I rest on the couch.
We go to the park, me pulling Sadie in her wagon, her laughing as I imitate a train. She is so easy, this one. So full of light.
The young boys at the park on their skateboards make me so nostalgic for my youth I stop and take a breath. They are sweaty and throwing empty soda cans at each other. The girls on their bikes look at them as they pass the park, already deciding on which boys are cute, taller since June. I remember this feeling so strongly, how we loved the boys before they knew how to love us.
When I get home, I talk again to B. I say I think we are making the right decision, that for me, a weight has lifted. He says he will always be my biggest fan. We are not breaking up because of lack of feeling, and so perhaps this is the saddest end of all. I dangerously let allow myself a sliver of hope to cushion these sharp edges. But I feel lucky to have him as my friend, the first man that I’ve dated that I know I will be friends with forever.
I know now what they mean when they say that timing is everything. It really is. I got a niece just as I got sicker than I’ve ever been, and her love buoys me through all the shit. I got BJ when we both weren’t in a place to love each other properly, but I get to keep him, albeit in a different space.
I confirm my reservation for my hotel in Big Sur next weekend, the long weekend a perfect time to give us a breather. The holiday, the bookend to the summer, always makes me a little sad. But I’m already a little sad, so I shall bid summer adieu in my favorite place on earth with my best friend and his daughter.
The night stretches into the early morning and I sleep in hour intervals. I miss him, even though I’ll see him before I go to LA. I enroll in a Shakespeare class to fill the fall. The autumn will be full of traveling and my sister’s wedding and time, constantly unfurling, bringing us to where we are, whether we like it or not.
And on and on we march.
I remember coming home from my trip a year ago, invigorated and changed, telling everyone that surfing was the hardest sport I'd ever tried and that kayaking next year would definitely be easier. I couldn't imagine being more exhausted than I was last June.
And that's truly what I believed until this past week, when I headed to Montana to kayak for my FD2 program.
I truly thought kayaking would involve just floating down some rapids. No standing up in the middle of ferocious waves.
But no. Whitewater kayaking is nothing like surfing. Yes, it's physically demanding and there's like, this water stuff, involved, but you're in a boat for 6 hours at a time. There aren't any breaks to hang out on the beach and eat grapes while ogling at surf instructors like I MAY have done in the Outer Banks.
If you're cold while you're kayaking, you're going to stay cold for six hours. If you're sneezing and coughing, you have to stay on the water, even though you are praying to God to make the week fly by. Which I did, more than once.
Kayayking can be pure misery if you're weak or tired or cranky. Three things I've been known to be.
And yet, I had one of the best weeks of my entire life.
And I was about to faint, shaking like a neurologist's dream patient, tired and exhausted when I realized it.
It was our first day on the water, and we had just graduated from the lake to the creek. Toward the end of the day, my kayak had flipped, completely surprising and scaring me.
When the boats came to save me, my already broken and bent arm was caught between a tree and a kayak and I was halfway submerged and in swirly water. I swam behind the boat to a little island where my camp directors and guides helped check me out and empty my boat. I was bruised and scratched and tired...
But I felt completely fucking alive.
And for me, this feeling of vitality saw me through a week where I felt like shit and wanted to sleep all day. I picked up a cold that steadily worsened throughout the week, and I couldn't kayak much because of my broken elbow and busted collarbone. (Turns out those two particular bones are useful when it comes to paddling.)
There were certain points of the week where I watched new friends challenge themselves and I felt helpless and stupid, a log on the sweeper raft that carried our gear and supplies. Every time my thoughts strayed this way, I tried to infuse myself with the inspiration I felt watching my friends surpass their own expectations.
At night, we ate great food and talked about cancer, how it had changed and hurt us, opened and broke us. How to parent, or decide to parent, or take on relationships with this heavy weight sometimes feeling like it was squeezing us tighter and tighter each passing day. We talked about how to kayak with cancer and how not to kayak with cancer: we talked about how to let yourself off the hook.
For a trip that could seem to others as depressing or morbid, I felt more alive than I have in months, even while admitting I was down for the count, not as strong as I wanted to be.
I have always struggled with pretending it's all okay in order to do the things that I've wanted to do: I went to a music festival in Tennessee two weeks after my appendix burst; I put off the doctor for a week when I broke my arm last month; I ignored the golf ball in my neck that turned out to be cancer. I regularly switch between telling the truth about how I feel and turning and telling everyone not to worry. I do it for others, but I mostly do it for myself.
You're fine, I'll say. This hurts, I'll say. I want to give up, I'll say. I want to keep living, I'll say. All within the course of a minute in my head.
This week reminded me that that is what life with illness is about. Leaning into the hard times (or the current) just so you can shoot down the rapid ahead. And that excuberance you feel when you look back and see what you've done?
That is joy. That is life. That is out living it.
Thank you to First Descents for another amazing week. Patch, Pedro, Braveheart: your friendship means the world to me. Thanks to our camp moms, who I want to adopt me so I can have a trio of moms badgering me about water. And thanks to Bomb and the Dude and our AMAZING guides for taking such good care of me.
I'm planning to run/walk a 5K in order to raise money for this organization that has taught me so much. You can donate here: http://teamfd.firstdescents.org/2013/fd/kellybergindotcom/. Thank you kindly!
When I arrived in Seattle after two flights and little sleep, I hurried to baggage claim to reunite with Matt and Maddy. And then Jenn, a stranger to me but a friend to Matt, picked us up in her van and we drove into the city.
I saw the Space Needle and it was there I realized the sores in my mouth were worsening at a rapid rate. The dry air on the plane hadn't helped. I pushed food around my plate and tried to engage, but talking hurt and my mood was damaged by the pain.
For the first three nights of the trip, I laid in my bed in Jenn's sailboat in her yard and cried silently from the pain and from the rawness of emotion that pain exposes.
I was surrounded by what would become new friends and wonderful children. And yet, I couldn't connect. I couldn't be me, because I couldn't talk.
I am loud, talkative person. I have opinions. I am fun but I worried these new people thought I was stupid, or snobby, or just awfully quiet. I wanted to go home, even though I was surrounded by tremendous beauty and wonderful hospitality.
The illness had followed me on vacation. And the juxtaposition of beauty and pain made me sick and insecure.
I wanted to be myself but the ulcers in my mouth stopped me. I wanted to make people laugh. I wanted people to like me and I was so afraid that they didn't. I wanted these people to be my friends and was afraid I was missing my only opportunity.
Sometimes I am struck by how different my life is from my peers'. Everyone gets tired and everyone's back hurts but my pain is different. It is cutting and unfixable and I'm tired and my back hurts too. One of the kids remarked on how much I napped and it broke my heart a little. I want to have their energy.
But all I really wanted was to be my self. The person who I am, the person I have worked to be.
A few days into the trip, I was having a good time but struggling, knowing how much better my time could be if I wasn't in constant pain. I took some very strong drugs and suddenly, the sores faded.
And I came alive.
I noticed the change in these strangers (strangers who I now call friends) attitude towards me. They were absolutely nice before, but now I felt like I was a part of something. I felt I had blossomed and bonded, just in time to make what I hope to be lasting connections.
I have friends who marvel that I travel when this ill. But I travel because I need to get out of my head. And feeling so sick while I was away truly challenged me. It crushed me.
Luckily, I had a great time. I saw beautiful places, met beautiful people. I bonded with children who will always have a piece of my heart. I spent time with my best friend and his kid. I met Jenn and Sara and Daniel and Rebecca and Kerry and Luke and Olive and Betty and Lucy and Henry and Thor and Rylie and I felt accepted and loved.
Traveling teaches me about myself. How to persevere and take that hike, despite the pain. How to speak by listening. How to reconcile rot with beauty, pain with treasured experiences.
This trip consoled me.
This trip taught me and showed me beauty. This trip reminded me that I am living a full life, despite the pain. And no matter what, I will keep doing it.
New Huffington Post Blog
Hi. I haven't been here in awhile.
It's not that I don't have the time. Boy, do I have the time. I have the time to watch TV and babysit my niece and take long rides to the beach on the bike my legs are too short for.
I have the time. But writing or reading might remind me that I should write or read, and I don't think I'm ready for that.
But maybe I am. Yes. Here I am.
In May, I was put on a drug for nerve pain. I immediately had a bad reaction to it, and we reduced the dose. Two weeks later, I held a bottle of morphine in my hand and did the math.
It'd probably take a few of these plus a couple of Xanax to kill me. I held the bottle in my hand and thought about it, how I wanted to be dead without having to do it.
But I stopped.
I reached out and I got some help and I saw a guy, a doctor. He told me that the drug had caused a really bad reaction, making me suicidal.
I would describe myself as prone to depression. I have a million excuses: I've basically been bed-ridden for 9 months. I am living at home. I don't and can't work. Writing is fleeting when I feel like this. It's hard to get me out when I'm sick.
One thing stood out every time I thought about ending my life. My niece's face. It shone like a sun every time I collapsed into the blackness of my head, of my bed. I could never do it, I thought. I would never ruin my family and friends' lives like that.
But boy, did I want out. I wanted no more of the lupus, the pain, the depression. The loneliness and fear and boredom. I just wanted to sleep.
I don't know when I started to get a little happier. I think it was around when I booked my trip to Washington. That gave me something to look forward to.
Eventually the drugs flushed out of my system and I was no longer on the floor. But sometimes, I'll catch myself crying over nothing, though those days are less and less now.
I guess I wanted to say that there is where I've been. Under my covers, wishing the rain to stop and the sun to shine. Grasping for glimmers of summer and riding that until I am out of my bed and biking to the beach to see that sun rise.
If you feel the ways I've just described, please get help. Not everyone is going to understand but someone will, and they will save your life.
Thank you for your support. I am feeling less like a Cymablta commercial and more like a real person. I'm blessed. We all are.
I am out of bed and I am smiling and I wish the same for all of you.
Saturday I was straight trippin
Itching to get my summer clothes
Went to my parents to search for robes
Found a bunch of sundresses to my delight
Little did I know I almost didn’t survive the flight (of stairs, doesn’t rhyme)
The pile of Forever 21 dresses lay in my arms
Barefoot, no socks to slip on
I approached the top of the stairs like I was pro
Been walking since I was 1, not to brag, yo
Made it down one step and much to my surprise
I almost had an untimely demise
I tripped then stopped then started again
When I looked up I was at the very end
I started to cry, man I started to scream
My dad found me face down in the stream (of blood, doesn’t rhyme)
My nose is bruised, my forearm broke
But I refused the ER, a $500 premium ain’t no joke
Been a few days and I’m all rusty and sore
This blog’s titled nine lives so again I endure
Can’t kill the Berg, can’t get her down
Maybe this summer I’ll up and drown!
It's been almost 2 months since I traveled to Colorado and Las Vegas. But in 8 days I head to Friday Harbor off the coast of Washington.
This lupus flare has had me back at home in NJ for almost a year now. I worry that I'm regressing, watching my friends bolt forward while I remain stationary.
I don't think I'd survive if I couldn't travel and write. They're the only way to get out of my head, and my body out of my bed.
One week, one week and I'm in the air again.
This one's a little God themed, but let it be known how I don't plot these, think about them, or even have an idea about what I am going to shove together on a magnetic surface until I sit in front of my sad, 20 year old mini-fridge. So maybe it's about God. Or maybe it's not.
Who knows? It's just magnetic poetry, yo!
Text as I'd have done it:
your coffee dark
It is almost
vision of the
You are steel.
For to be
and you must
wild, broken, brilliant
Or just National Poetry Month.
Here's my contribution. If you can't read it, I'M SORRY. I sat on the kitchen floor during my insomnia (still haven't slept yet, hi drugs)...so here's the text. I really missed having more words but I only have the "Geek" version of Magnetic poetry that I bought at Target for a dollar.
I'm a pretty serious poet, guys.
Here's the text as I would have liked it:
If you need
to get out
of this world
live in action,
and write about the war.
But then, will you
please come home to me?
For I, too, am fire.
After my mom, sister and I take a walk, the baby naps in the Pack and Play upstairs in my sister’s childhood bedroom. I sneak away into my apartment over the garage. My sister is on the phone with her fiancee.
I kick and roll and beat on the comforter, I whine and moan and scream no no no. I pour Vaseline into my nose, my mouth, the Anbesol a coat for one gust at a time. I see there’s no choice: the roof my mouth pulsates so I take a Diaulidid. The sores in my mouth and nose bleed, bleed, bleed. They wrecked my pillow in Vegas the other night. I am so exhausted.
My mom texts to tell me it’s time to come back because we are eating for my father’s birthday. I cannot and do not eat but I sit at the table (I have always been made to for which I am glad.) Sadie cries. I pick her up and bring her downstairs, careful to walk slowly, careful not to fall.
We eat dinner and my father is happy, my parents back together, always in love (they have never stopped; there was just so much more than love). My mom is not drinking. I am slightly under the haze of the drugs.
We FaceTime my brother and tell my dad we bought a new canoe for the lake. My sister presents the flourless chocolate cake. I burst into tears accidentally because a piece of my dry lip falls off as I brushed my hand to my face. I get it together. We cheers. We sing. We adapt and adjust like we always have.
The baby is 6 months old and she waves and I love her, and them, and the way we could be perfect, even though I am always broken, I am always making them wish I could be okay.
This is how we have always been, me the oldest, the younger ones knowing how to handle my sickness. They are the closest thing to understanding it without having it. They are family. The best family. They are love.
I'm in a bed in a lodge near Vail, Colorado. Next to me sleeps one of my fellow campers from First Descents (FD).
There were about 15 of us on that trip I took to the Outer Banks in June. We learned to surf. Our ages ranged from 21-38. There were more girls than boys. We kayaked and swam and at night played games and eventually we could talk about cancer, how it had ruined and invigorated us, how we were trying to live our new lives as survivors and patients. How to raise children and buy houses and live like our life expectancy hadn't been trimmed the day we were diagnosed.
We had an amazing week. It was special; we all felt it. A few months later, the organization (which is quite large and ran 50+ kayaking, surfing and climbing camps last year) announced our camp had won the Golden Paddle Award. Usually awarded to the highest individual fundraiser, our camp was the first collective recipient. First Descents believed we embodied the spirit, the connection and the dedication to the organization.
The award will be given out tomorrow night at the annual FD Gala. I've been tapped to accept the award on stage and ask the partygoers to remember Hardcore, our beautiful friend and fellow camper who died last week. I will also ask the gala to stop for a moment and remember the campers who have died from cancer.
Tonight, as we drove home from an FD-sponsored happy hour, I felt sunk, instead of buoyed by my fellow FD-ers who had been able to make the trip.
Although we text every day, physically witnessing friends who have become so close to me struggle in pain is awful, heart-wrenching and nauseating; I now have an inkling of how my friends and family have felt watching me. Knowing that some of these friends I've made will succumb to cancer before me guts me as well. These are people who I have known 10 months yet am closer with than friends i've had for years, for the simple reason that they understand. Simply, very simply: they have been there, and they understand.
When I met my friends at the gate in Denver today, we immediately started up laughing and joking, discussing painkillers and poop, and tearing up over the loss of Hardcore.
This community has changed me. It has changed my life and the lives of others for the better. And it has taught me loss. It will keep teaching me loss.
Tonight, as I looked around at sick friends at the bar, I cursed this fucking disease. And I remembered life isn't about big moments; it's about these connections and the hope they give us. It's about the small moments of love and connection that become so large when you look back on your life.
And that's what I'll say tomorrow night as I accept the award on behalf of my camp. FD is hope. FD is power. FD is love.
I haven't cried, even though Hardcore (camp nickname, tradition at FD) came out to support me in Denver when I ran for Team FD. I haven't cried even though Hardcore sent me a care package with a necklace from Etsy not a month ago, when she knew she was dying. I haven't cried at all.
I went to my nanny job and ran around in the backyard as it hailed with the kids and the dog. We jumped on a trampoline and I played the drums. I didn't say Fuck in front of the kids but every text I got about hardcore's death made me feel the punch of that word even louder. I banged the snare drum, I crashed the cymbal with my stick until it was loud enough to make sense.
Matt texted me that Jason Molina had died and the misery started to add up. I drove home and blasted "Just Be Simple Again" and thought that he wrote songs with feeling, with feeling and how rare is that?
I've been laying on the floor for an hour, vomiting and sick. I leave for Denver Friday for the FD Ball, an event Hardcore was supposed to attend. And then instead of booking a flight back East, I booked a one way ticket to Las Vegas to hang out with Matt for a night. Then we'll drive to LA, where I have no place to stay, really.
I am being careless. I have no money, I don't give a shit.
I can't tell if I'm desperately trying to grasp "living" in the way First Descents encourages us. (Please google them and learn about them, they are so vital to young adult cancer survivors).
I can't tell if i'm "out living it" or running the fuck away from something that cannot escaped. From the fear of losing more, to alcholism and to cancer. From the fear I'll relapse, too.
All the ones I love,
they are so precious.
They are so easily taken.
(This was an email, like The Daily Lupus instead of The Daily Rumpus or something, but only to one person and now I suppose it's to all of you.)
Good morning! Happy Spring Forward!
I'm excited about this but I haven't been able to sleep in days. Yesterday everyone was over for my niece's christening, 60 people nicely asking how I am. And I'm cranky (actually, I'm crangry, a word I invented that means cranky, angry and hungry), but I'm trying to be okay so I say "so tired" because I'm too tired to lie and say that I'm not, so everyone starts to tell me how my sleep patterns are JUST like a new parents. You know, the kid's up every couple hours to eat or cry or poop, which sucks, but I'm not a newborn baby, I'm not a parent, I'm just a 27 year old human being who has not slept more than an hour straight since Thursday morning. (Plus, I don't want a damn baby! And if I do, I'm getting a baby nurse because this. shit. is torture.)
Anyway. I know this accuracy of my sleep timing because I keep a sleep app open and it tells me these things. I'm not sure how much I believe in its' accuracy when it comes to measuring REM and that stuff–it's just an iPhone, and maybe it's just an iPhone and CAN do that, which is perhaps scarier–but what I do is hit the sound machine button when I'm going to sleep, and then swipe it when I wake up.
Right now I'm experimenting with different noises Sleep Cycle offers. The rain made me have to pee and so did the babbling brook. I went again with no noise. Then some white noise, brown noise, pink noise, no noise again, city noise...
I once lived over my favorite bar in the Bronx, in the neighborhood where I went to school. It was so loud, but I slept fine, probably because most of the time I was passing out from drinking too much at said bar. That was before I had cancer though, and although I've had lupus and Other Random Diseases since I was a baby, the cancer changed my body for the worse.
The loudest place I ever lived was that castle building in Hollywood/Los Feliz. At night the LAPD choppers would scream above me, and I always felt like an earthquake was coming, and I was excited and unprepared and already shaping the narrative of how I'd tell it: "So, I had no flashlight, and my iPhone battery was down to 88 percent...". The earthquake never came. I didn't sleep well there either.
But this is bad. This is hospital bad. Hospital bad is a different sort of bad because they wake you up every 2 hours to check vitals and there's always doctors and nurses and priests trying to save your soul streaming in and out. But I'm not in the hospital, and I wish I were, because at least then I'd have IV Dialudid (legal heroin, basically) shooting into my veins and I wouldn't be so fucking aware that I am awake. Also, they have cranberry juice there, and I could really go for some right now.
My eyes are crossing again which means it's time to close them again. I can keep them open for about 10 minutes, enough time to pee and tweet and complain. I can type when they start to cross, but only with one eye open. Reading is hard, I forget everything I've watched on TV, I keep re-reading recaps of the episodes of Scandal I've watched (all caught up!). I don't have the energy to watch last night's Girls but watching The Bachelor's okay because it's just a blur of molded flesh, tan against the blue background, the white snow.
I'm going to try and go back to sleep again. But my mouth is getting worse. And I'm taking oral pain meds and Advil PM and even half an Ambien but I'm awake, and it sucks. I'm sorry for complaining and not bothering to edit or reread this. You can correct my grammar and tell me to throw the iPad away or maybe give me a remedy. Just don't say guided meditation because at this point, my subconscious has visited every damn beach in the world with Bachelor Sean Lowe and yet here I am, wide awake (and it's morning).
I guess I have to say one more thing, and it's this: I wake up screaming "NO!" or with my head pressed into the pillow, my face scratching back and forth against the pillowcase as I try to stay asleep. I am screaming sometimes. Maybe I am an infant. Maybe this is all a bad dream...
OK. Back at it. Talk to you in an hour. Or maybe 18.
What to say but that I have an incredibly full life.
I have friends, long time friends, short time friends. I make friends easily, I am charming, I can shake a hand and tell jokes and sometimes it's the old Bergin bit, but they don't know that yet, they are new. And my friends smile when they introduce me and I feel warm and glad and being outside is wonderful.
On a Friday night, I sit in a bar for four hours with Sam and we decide we are going to help the world, to give back. And we bullshit and we laugh and I run into an old high school classmate. Sam leaves and I engage with her until my time is up; my mouth has run dry, the painkillers have receded. The narcotic warmth I once felt is slowly creeping back inwards from my fingers and my toes, back into my gut, and I know I must be going home.
I get a cab and my friends are in Bushwick, telling me to come to the show, but I give the driver Genevieve's address, where I am staying while she is away. I climb into bed, and I count out my pills and I do not feel lonesome, not yet. This act is familiar.
Two hours I awaken and the pain is red hot, black mascara tears streaked across the pillow case, my face swollen, eyes puffy. I have to be at the museum in 8 hours but I do not sleep for the rest of the night. I take the drugs, I read, I mumble the f word until I linger between feeling and sleep.
On the subway uptown I think of the ways I will avoid the pain today. I text message pictures of my mouth to my friends in med school. We agree that upping the prednisone will heighten my blood sugar but will decrease the sore and that needs to happen, because the sore, the big one, it is a white albatross on my tongue, a crater, an open wound in the most vulnerable of places. I buy Anbesol for 10 dollars at Duane Reade and subway drivers look at me, ever so briefly, as I apply the coating.
At the museum, I have fun, I hold babies and I make children laugh but I cannot forget about the pain; it takes the wit I have and it dulls it, as sharp as the butter knives the Indians used to husk corn. I point out the tools to the kids, and they are amazed at the hunting and gathering done so many years ago.
Sometimes I want to talk in sentences and paragraphs but I cannot and when Claire and Jess ask how I am, I cannot lie. I am finding more and more that the lie I have told so much: "I'm feeling better!" will not come. It sticks, stubborn in my throat. They know how to do nothing else but to hug me; this is enough, it is what I need. Slowly the Anbesol I have reapplied saves me, and I forget momentarily that my day's obscured by sickness.
It is on the train ride home that I let the drink I had at the station mix with the half of the painkiller I had left and I lie across an empty seat and thank the NJ Transit worker who let me into an empty car when she saw that I could not be among the others, the noisy others. She found me a bathroom and an outlet and did not ask me about the tears of pain and exhaustion in my eyes.
What I am saying is that there is kindness here, in this world.
When I get home I finally scream, I throw up from the pain, I let my mother rub my back. She does not tell me to buck up, to think of the children in Africa. I reach out in a wild rush to a friend and his response is as perfect as one's can be. My cancer friends remind me of things to look forward to.
And I do, I do, I see how good I have it, I see this love-filled life I have, I see the miracle that is being me. I see my strengths and I loathe my weaknesses. I love my life; I want to leave it forever.
I cannot change the physical pain, though, and I fear it is slowly taking me away. Am I defying this fate or am I avoiding it?
I am avoiding it, and I will, for as long as I shall live.
I went away with my friends for the weekend, a big gaggle of them, friends I have known for 7 and 10 and 12 and 0 years. We rented a cabin in the Poconos and at one point I laughed so hard I didn't think I would recover.
Did I ever tell you that illness is addicting? That it can be a crutch? That it is a way to stay inside all the time because it can be justified?
I never had social anxiety. I was voted class clown. I have always been open and social and easy to talk to.
When I got sicker after I finished cancer treatment, I got depressed. For years. For years I was depressed and drank so much and apologized and stayed inside. I have spent years of my time inside.
When I got to the cabin, I was hit with anxiety. I took half a Xanax to relax around friends who I'd happily call family. By the end of my weekend, I couldn't believe I was panicking that I'd forgotten how to be the me I always was and always will be. That for my entire drive there (3+ hours alone in a car blasting Lyle Lovett), I worried everyone had moved on and changed and I had stayed inside too long.
Sometimes it's necessary to have a crutch. To stay inside. To take half a Xanax. To sit on a closed toilet seat with your phone in your hand because zoning out feels like comfort.
But we need to be able to walk without the crutch; to drop it and just be.
Because sometimes, you walk toward exactly the right place.
Hello, people. We are on week three of my life without a thyroid.
Well, five years and three weeks. But three weeks without taking my thyroid hormone.
I was reading about how this was going to make me feel and I read this message board of complainers who likened being thyroid-less to being sedated.
I was like LOL, I am stronger than that. And then the next morning I got up early to take the dog to the beach and drove over a huge, visible piece of driftwood and slashed my two front tires.
But that was surely a coincidence, right?
The next week I got lost. In Interlaken, NJ. A town of .383 square miles (according to Wikipedia). It's got like 5 streets. And my parents moved here
when I was 16.
I finally found my way home and promised to drink coffee before leaving the house again.
Then on Valentine's Day, I was babysitting because HAHA MY LIFE IS SO SAD, and I had to drink 3 Red Bulls to keep up with the children. Despite the fact I take medicine for tachycardia.
When the parents got home at midnight, I had drooled on their sofa pillow so I had to quickly turn it over before they saw. As I got in my car, the mom came running out WITH MY CAR KEYS. And my iPad. I then got in my car to leave and drove halfway down the street with the windshield frosted over, before I remembered that I left my charger at the house.
So the parents are standing in the kitchen, possibly talking about their love for each other, and I barge in ten minutes after leaving to get my charger.
The next day, the mom texted me I'd left my hat there. The hat I wear to cover up the fact that I have no energy to shower!
I then babysat for them on Tuesday and left my scarf there. I almost want to explain why I'm so scatter-brained but I'm too embarrassed.
AND THEN...the other night I rolled over in bed and cried because it hurt so much to move (fatigue, people) and I accidentally knocked all the crap off my bed into the narrow space between my bed and the wall. Without thinking to turn the light on, I just stuck my FACE down to see what I'd dropped (Frosted Flakes and books) and then TOPPLED, HEAD FIRST, into the chasm.
I nearly broke my crown, JACK AND JILL STYLE. (Note: this is actually something I've done while ON thyroid medicine, but I'm going to blame my dumb body for that stupidity.)
Lastly, last night I tried to heat up leftovers in the house. I was about to place the aluminum foil in the microwave, as one should never do, when the dog barked and distracted me. I let her inside and then went back to my apartment over the garage (my life is a fucking screenplay), only to wonder ten minutes later why I was so hungry. Didn't I...wasn't there...leftovers? I...think?
Luckily, before I ate, I remembered my dad telling me to heat up my dinner in the oven. So, missed that possible electrocution, which is a plus!
I've got another 3 weeks of not taking the hormone, and then blood tests to make sure my level is low enough to do the scans. And then 10-14 days after that, I should be feeling somewhat normal.
So, send Red Bull until then...and don't ask me to do anything that requires me to multitask. Like text and drive. Or walk and chew gum. I will choke.
(Thanks for all the care packages, birthday wishes and general love. I am astounded at the generosity of my friends. Love to you all.)